Hans Asperger, sexism and autism in women

In a recent paper in the Journal of Autism and Developmental Disorders, Dean Falk presented the conclusion that Hans Asperger "neither disparaged his patients nor was he sexist". 

The latter part of this claim seems strange in the light of the article itself. There is no discussion of sexism and little about gender or sex in the text. Falk only mentions that someone else had accused Asperger of sexism, and points out how Asperger influenced Simon Baron-Cohen and some other researchers:

Asperger’s comment that “the autistic personality is an extreme variant of male intelligence” (Asperger 1944b, p.84) anticipated Baron-Cohen’s “extreme male brain” theory (Baron-Cohen 2002). In addition to discovering that AS is recognized more frequently in boys than girls, Asperger hypothesized that this phenomenon may be associated with genetic as well as environmental factors: “There is certainly a strong hint as a sex-linked or at least sex-limited mode of inheritance” (Asperger 1944b, p.84). Although the topic of sex differences in autism is controversial (e.g., researchers differ in the extent to which they think camouflaging impacts apparent prevalence rates in females), contemporary researchers are fruitfully exploring this ‘hint’ (Beacher et al. 2012; Iossifov et al. 2015; Lai et al. 2011).

Over the past years, I have occasionally tried to point out that Asperger's ideas about sex differences were probably typical of his era and cultural environment, but by modern standards they were deeply flawed. I believe that the flaws have been perpetuated in autism research and the shaping of diagnostic criteria. Further, I believe that this is one of the reasons behind autistic girls and women being under-identified and their needs not receiving proper consideration when services are planned and provided. This is not a small matter.

What were Hans Asperger's beliefs and attitudes concerning women? How have they guided the formation of current ideas and research directions? The following excerpts shed some light on what Asperger thought. They are from a second edition of Heilpädagogik, a textbook he wrote, published in 1956, at a time when he had had plenty of time to crystallize what was essential to his theory and approach. These were some of the things he wanted to pass on to students as the core of his knowledge regarding autism. I feel there is no reason to vilify him, but neither should we naively place him on a pedestal or attribute ideas or ideals to him that arose after his era. He made some very intelligent observations, and was right about many things concerning autism. He was utterly wrong about some things, blinded by common misconceptions. That is how most scientists are, if we look at them up close.

The translations are mine. Sorry about minor inaccuracies.They do not change the overall message.  

"Looking at our autistic children in terms of their gender, we are faced with the astonishing fact that they are almost all boys. In girls, we did find contact disturbances, which in some cases resembled the autistic disorder; we found clinical pictures similar to schizophrenia, as well as girls in whom encephalitis was the cause of such a condition, but in our own material we did not find a single fully developed case of what we have described in this text. Is it a sex-linked hereditary condition, or at least limited to one sex? It is something akin to that.

The autistic mental disorder is an extreme variant of the male character, of male intelligence. Even within the normal range of variation, typical differences in intelligence exist between boys and girls: girls are generally better learners, suited to the concrete, the intuitive, the practical, and to working neatly and eagerly while following models provided for them, whereas boys are more logical, having the capacity for abstract thought, precise thinking and formulation, and independent research; when girls are capable of the latter, as well, they are usually types that lean towards the masculine."

(Hans Asperger, 1956, in Heilpädagogik, Zweite Auflage, p. 186)

"In autistic disorder, this behavior is emphasized to an extreme degree. Abstraction, which is more in the nature of masculine thinking, has advanced so far that its connections to the concrete, to things and to human beings, are very limited; adaptation to the demands of the environment, which still predominantly happens through instinctive functions, is achieved only to a very limited extent.

We find one observation that we were able to make in America very illuminating and typical: there are not only far greater numbers of autistic women, but an identical, in all details characteristic clinical picture is found in girls, not much less commonly than in boys. It appears to us that this fits well with another fact that often catches our attention there in other contexts, as well: in the US, the development of modern civilization is much more advanced than here, with hypertrophy of intellect and a gradual diminishing of instinctive functions, or a loss of integration between those two spheres of life, with the same threatening to happen here. This is particularly evident in the alteration of the female psyche (of course, this is especially obvious in the living conditions of the big city), in the sense of women's masculinization, which is reflected in numerous details of American public life. Intellectualization and loss of instinct, of course, are particularly noticeable in women, because the strength of the female psyche has until now relied above all on her being very different from man in her instinct, in her genuine emotion, in which men can never match her. Is it any wonder then that this development, brought on by women’s ”equal rights”, pushed through in America to a far greater extent than here, brings with it more frequent and intense occurrence of the "masculine forms of mental disorder" in such a population?"

 (Hans Asperger, 1956, in Heilpädagogik, Zweite Auflage, p. 186-187)

I think we have to conclude that by any current standards of the western world Hans Asperger was definitely sexist. He did not only believe in the ideas expressed above, he taught them. He was not sexist solely because of being unaware of other ways of thinking. As the texbook shows, by the 1950s he had heard about equal rights, had dismissed the idea, and actively promoted the view that insisting on equality would distort girls' development and turn them into unnatural, masculine women. It looks like even many of his contemporaries might have had reason to consider him sexist. There is a tone in his writing which seems almost like he desperately wanted to defend his old-fashioned ideas from the onslaught of modernity, and that he might have allowed this emotional and ideological drive to influence how he formulated his understanding of autism. Current autism research or theory should not be built on this foundation. We need to pick what is real and usable, and finally, permanently discard the parts of Asperger's legacy that are complete nonsense.

On diversity and disability

A while ago I witnessed several people reacting with anger and instant condemnation to Judy Singer's thoughts on her Facebook page The Politics of Neurodiversity. It seemed that there was just no room for discussion, at all. I found this disconcerting.

I have certainly not liked or agreed with everything that Judy Singer has said and done. The ASpar website, for example, based on a late-nineties support group, I find dreadfully one-sided and inconsistent, seeming to promote the idea that it's ok to project an entirely negative image of autistic parenting on the basis of anecdotal reports of obsessive, narcissistic or just plain callous behavior exhibited by undiagnosed parents. I was delighted to see a website featuring positive stories about autistic parents springing up as a reaction, providing some balance.

Nevertheless, if a person re-enters a discourse where she was a significant early contributor, with the intention of learning and re-shaping her views, should we not at least listen before passing judgement? Is neurodiversity as an idea so fragile that it cannot survive a debate?

Having participated in autistic communities, the autistic rights movement - whatever you want to call it - for more than two decades, I do not feel personally threatened by any discussion on the concept of neurodiversity. It was simply not there, not commonly used, back when I first got involved. We used other concepts to express the idea that our thinking and self-expression are valid and should be respected. In the Finnish community of active autistic adults, I still see neurodiversity appearing as a handy term that people have adopted, because it happened to translate well from English, rather than as something discussed at length, or used as a focal point in activism or identity politics. As a result, while I feel that neurodiversity is a very useful concept that has helped many positive ideas to emerge, I just cannot see myself as either a dedicated defender of it as a "paradigm". The ideas of autistic space, autistic rights, autistic empowerment, are equally valuable and important to me.

 Here are some thoughts that I posted on Facebook, in response to discussions, on the connection between diversity and disability.

Having studied biology when I was younger, I have always considered it self-evident that diversity includes forms of life that are less than optimally adapted to their current environment; species that are dwindling, or causing another species to dwindle, individuals with lower than average reproductive success, even ones that suffer, through no action or inaction of human societies, but simply as a result of random combinations of genes and environments. All this is included in the wider framework where we see stability as a result of diversity.

When people talk about neurodiversity as a paradigm or ideology, I see them giving the word "diversity" a different meaning, excluding things they consider undesirable, pathological, or destructive. Sort of the happier half of diversity that has potential to be advantageous, or at least neutral, in human societies approximately as we know them, if only attitudes can be changed.

While people argue on the basis of fundamentally different definitions of a basic concept, I think there will inevitably be constant misunderstandings and conflict.

Someone pointed out to me that they had always interpreted neurodiversity in the same sense as "diversity in the workplace", a cultural and societal concept, not one akin to biodiversity. From their interpretation, it would make sense to take the stance that neurodiversity is all positive and must be promoted as a paradigm. The things they say might to me sound like they are unrealistically trying to pretend there is no dark side, if I don't consider their conceptual framework. To keep things clear for myself, for now, I tend to think that there is bio-neurodiversity, which is a fact, covering all variation, the benefit of the concept being that it helps us to see how *some* (but not all) of that variation should not be branded as pathology. Then there is cultural-neurodiversity, which is about asserting our right to be present, visible and appreciated as neurodivergent individuals in human societies, and not have our self-expression unnecessarily branded as pathological, or our right to self-determination questioned - while for some neurotypes, the necessity remains; no one really wants to promote the idea of letting sociopaths wreak havoc in workplace communities, for example, so they tend to be excluded from that type of discussion, or remain an insoluble dilemma.

AIMS-2-TRIALS and autistic voices in medical research

I am resurrecting this blog under a new name to comment on recent developments in my life and advocacy efforts. When the older articles were originally published in 2007-2008, this blog was called aut-word.

I will be participating in something called the "Autism Representatives Group" or A-reps, which will have a consulting role in the large multinational research programme AIMS-2-TRIALS. The projects in this programme are run by pharmaceutical companies, universities and NGOs, a total of 48 partners. The A-reps group is run by the British research funding charity Autistica, the University of Cambridge, and Autism Europe. Its first six members will support the coordinators in their selection of the rest of the committee.

Many people who know me might wonder why I've decided to participate in this, and whether the organizations where I do my voluntary work are involved.

None of the organizations or networks I'm involved in have had any part in this. I can only consult on the basis of my own knowledge, training and experience. As the project website puts it, we will consult "from the many different perspectives of people with personal experience of autism".

I consider this a tentative early step towards active involvement of autistic people in this type of research. Medical and genetic autism research goes on in many forms, in numerous countries and projects, without any attempt to hear autistic voices, and without anyone protesting.  We have to start somewhere to have a chance of learning to influence such work.

I am probably more inclined than many others in autistic communities to expect something useful to come out of biomedical research. I sometimes feel that people are barking up the wrong tree because they have simply misread some article, or more probably, believed some journalist's inaccurate interpretation of it.

I know many people who feel that some type of medication is essential for them to get through the day, and I feel I cannot judge them. I hope some of them will eventually get something more closely tailored to their needs than the current products. I also hope that eventually some of this research will contribute towards monitoring our vulnerabilities to certain physical illnesses, and providing treatments.

I do not have faith in every research direction, though. My presence in A-reps should not be interpreted as endorsement of any particular research team or project partner. I am, and intend to remain, a critical voice, not participating to advertise anyone or anything to potential customers or trials participants, but simply to provide feedback. I'm also hoping that I might be able to translate some of the research to lay terms, to help other group members to join discussions and develop informed opinions. 

My views on some general aspects of research are quite close to the ones expressed in this response sent to the European Medicines Agency (EMA) in 2016, regarding their draft guidelines for researchers. The text was signed by several autistic people's organizations, and it was completely ignored by the EMA. Perhaps with sufficient repetition, some parts of the AIMS-2-TRIALS consortium will eventually hear what we were saying back then.

 



 

Interview with Matthias Huber

For the past ten years, Matthias Huber has been involved with Worldwide Autism Association (WAA), a small ‘by and for’ type organisation founded in Switzerland by Patrick Frey. WAA has multinational membership, and all its members are on the autistic spectrum. Recently Matthias also became board member at his national autism society. I interviewed Matthias about his experiences and his current academic work.

The idea of self-representation autistic people has come up only recently in the Swiss autism society. Matthias tells about how things started moving:

- I am member of Autism Switzerland, German-speaking part. We have a French-speaking and an Italian-speaking part. Together we all form Autism Switzerland.

- There were some people on the spectrum who complained about only parents and professionals being board members. After some discussions within Autism Switzerland German-speaking part, they decided to take an autism spectrum person "on board".

I asked Matthias about the selection process. He expressed satisfaction with the cautious and thorough preparations taken by the Autism Switzerland board.

-They first invited me because I was recommended by professionals as being always on time, knowing much about autism (personally and as a professional), being active in teaching parents and professionals about autism, and teaching people on the spectrum about the behaviour of the non-autistic population.

-They invited me to some of their meetings, as a visitor for a couple of times. During these meetings they explained everything to me; structure, formalities, and content of discussions. After these visits they asked me if I would be interested in becoming a member, and if so, what would be my personal interest in being one. I got officially elected at a general meeting.

-They did a good job. Explaining every step, asking what would be appropriate for me – regarding things like asking questions, environment...

Matthias has a variety of tasks, tailored to his abilities and limitations. There is plenty to do, as awareness about adult issues is still very limited.

-I am a representative for people on the spectrum. That means I tell board members about their requests, their wishes, their concerns. I do not have a department as the others have, but "special duties and responsibilities".

That means I only do things I am capable of, like helping with renewing older articles about autism, or to writing some parts of new ones. Or helping to find future speakers (professionals, parents, people on the spectrum) to invite to our events. They ask me about my opinion on offering a workshop for people on the spectrum, what ideas I have, or if I could ask others on the spectrum about their wishes. I go to autism relevant events and tell them about it, or I write summaries about the events.

- There are urgent issues in Switzerland, like being aware that autism is a life-long issue. Adults on the spectrum are rarely discussed in media; diagnosticians for adults are not yet taught about the autism spectrum; there are workshops and summer camps for children and teenagers, but not yet for adults. Many adults on the spectrum do not find appropriate education, jobs, or apprenticeships.

Matthias trusts his autism society’s willingness to improve the situation. He believes that much could be gained by international co-operation and networking, but has doubts about his own resources in this respect.

-Autism Switzerland and its German part are interested in hearing from adult-oriented projects from other countries, and they are in contact with Germany for instance.

-Sometimes it is not possible to copy everything, due to cultural, political or social differences, but it is possible to copy some parts and to modify the rest.

-I am convinced that international networking between autistic adults or between organizations is important. Personally I am afraid that it would take too much time being active in networking, but I am still interested.

In 2005 Matthias visited us in Finland, running a workshop about his master’s thesis. He got very positive reactions from the Finnish audience, as a professional dedicated to patient, empathetic hands-on work with children on the spectrum. Currently he is pursuing a doctoral degree.

-My doctoral thesis is about special interests in Autism/Asperger Syndrome: The meaning of special interests. Until today, no research has been conducted on a possible correlation between the stage of psychological development of individuals with Autism/Asperger syndrome and their cognitive, emotional and social expression while engaging in their special interests.

-I would like to show that special interests are more than a clinical symptom. They should be seen as more than just a psychopathological diagnostic result. Special interests are a tremendous resource at home, at school, at work and at therapy sessions.

Interview with Kerry Brook

It is often difficult to draw the line between organisation and action group or peer group. Small groups can make a difference, helping their members, influencing public policy, educating people, often just as well as larger organisations. At the end of 2007, I talked to Kerry Brook, representative of one influential action group, Autism Rights Group Highland (ARGH).
I asked Kerry about the events leading to the formation of ARGH. The history of the group is closely tied in with local service development

- From June 2005 to May 2007 the Scottish Executive funded a study looking into the provision of services for autistic adults in the Highland region of Scotland. As part of the study consultation groups were formed: one for parents / carers to give their views and one for autistic adults themselves to contribute. I should mention that it took some persistent persuasion before the group for autistic adults was set up as this was not in the original plan.

- At the first meeting of the adults group a few of us decided that we wanted to form our own group that would continue after the study had finished and would be fully independent and managed by ourselves and other autistic adults. For many this meeting was the first opportunity to meet and mix with other autistic people and we felt that meeting each other was of benefit and should continue.

- As the funding for the study and therefore the original group came to an end Simon Webster who had been given the task of executing the study facilitated the continuance of the group: by arranging funding for insurance and aiding the drawing up of a constitution; he gave us the “kick start” that we needed to continue before being left to run as an independent group.

After the survey of needs, recommendations were made to develop the local services, but these were ignored – apart from one, which led to a disastrous situation.

- One recommendation was implemented (a recommendation that was added at a late stage of the consultation and contested by parents/ carers and the autistic representatives): the decision to withdraw funding from the Scottish Society for Autism; (SSA). The SSA had been providing the only autism services for adults in the whole Highland Region (although they also dealt with children and families) including referral for diagnosis, suicide prevention, relationship counselling, crisis management housing problems and general day-to-day problem solving.
ARGH's current primary concern is with acute situations created by this gap in service provision.

- The most urgent need is a point of contact for those that find themselves in crisis and have no-where to turn; a service that will ensure a safety net for those that find themselves alone and desperate and may be at risk including at risk of suicide. Currently there is no provision of services and autistic people without an identified learning disability or serious diagnosed mental health problem; we fall through the gaps and there is no responsibility on anyone to provide any service at all.

Like most groups of autistic adults, ARGH has had to define its boundaries with respect to existing organisations and non-autistic allies. Full membership of the group is limited to people on the autistic spectrum only, but this was a decision that required thorough consideration. Co-operation is valued, but experiences of conflicts have made the group members cautious.

- A couple of us who have children had previously been members of a local autism society that had claimed to represent autistic issues as a whole but we had found them to be quite obstructive and unwilling to listen to the views of adults. After months of bullying this culminated in the expulsion of several autistic members from the group as they saw it as a group for parents only.

- I personally would have preferred to have kept working with the parents in the area as I feel that speaking with one voice is an ideal: parents/ carers and autistic people working together for a common goal. This view however was not shared by the parents who made the decisions and so was unworkable. In the end we felt that to ensure our voice was strong and spoke from an autistic viewpoint we would have two tiers of membership: full members who are all autistic and associate members who do not have voting rights yet share our principles and vision.
More recently we have been developing a working partnership with a parents group who are more accepting of the need for autistic people themselves to have a voice; we are not opposed to working with NT allies we welcome working as a team but we still feel a need to retain our autonomy.

Local publicity has turned out useful for ARGH, making service providers more attentive to their message. The members are developing roles as consultants and educators, gaining respect and credibility through years of effort.

- After a recent newspaper article which ran on the front page as the leader in our local newspaper (for which two of our members were interviewed) we have raised our profile and found it much easier to arrange meetings with local managers in health and social work, currently we think they are listening and are hopeful that some progress will be made in the provision of appropriate services. Many of our members have been involved in training over the years including in conjunction with the SSA and the education department; talking at seminars and direct hands on training.

- Next month we have our first day of training that has been designed by one of our members and will be delivered by us alone; hopefully this will be the first of many.

Regarding co-operation with other groups of autistic adults, Kerry is cautiously positive, emphasizing the principles formulated as ARGH was formed.

- We have been careful to make sure that ARGH is fully democratic and it would be something that members would have to have agreement. We have not had lengthy discussion on affiliation or working with other groups, however our members do appear to agree that we value our independence and we are striving to make a difference in the Highland region whilst in the future hoping that growth may be possible.

- There are members of our group who have attended Autscape and we have some who are AFF members also. I am not really sure who we are closest to ideologically, I’d probably have to go for ANI (although I am aware this is not a UK group) because they are closest to our principles but also share the belief that equality through choice and opportunity are key. Although this view is shared by many groups we would not wish to associate with any group promoting autistic superiority. Equalness and fairness of opportunity: the right to live a full life as the individual chooses are crucial.

autistic organisations

I have tried to list all organisations in the world that are mainly or entirely 'by and for' autistic people. This immediately led to problems with categories; what proportion of people on the spectrum is enough - in the general membership, and in decision-making bodies? What is an organisation anyway? 

Some don't make it very clear on the net whether they are official, how many people are involved, or whether there are any actual decision-making bodies or formal decision-making processes involved. I like the British, I really do, but they seem to want to do things in little scattered groups that other people do in larger associations. Some organisations seem to do a lot of worthwhile stuff, but if on the website autistic people are 'they', not 'we', I dunno... maybe they wouldn't even want to be listed as part of autistic organisational culture.

This is the approximate list I've come up with, arranged by founding date. Sorry about any accidental omissions. I would love to have information about any organisations I may have missed. I'm including autistics.org and some of the UK groups that seem to have broader aims than just local networking and peer group activity.
Autism Network International (ANI), USA, 1992
Worldwide Autism Association (WAA), Switzerland, 1998
Föreningen AS/HFA, Sweden, 1998 (?) - dissolved in 2002
autistics.org, USA/international, 1998
Autism & Asperger's Syndrome Coalition for Education, Networking and Development (AASCEND), USA, 1999
Autistic People Against Neuroleptic Abuse (APANA), UK, about 2000
PASS-partout, Belgium, about 2000
PAS Nederland, the Netherlands, 2001
The Global and Regional Asperger Syndrome Partnership (GRASP), USA, 2003
Aspies for Freedom (AFF), UK, 2004
Aspies e.V., Germany, 2004
Aspergia e.V., Germany, 2004
Autscape (organising committee), UK, 2005
Asperger Adults of Greater Washington (AAGW), USA, 2005
Organiserade Autister (OA), Sweden, 2006
Suomen Aspergeryhdistys, Finland, 2006
Autistic Self-Advocacy Network (ASAN), USA, 2007
Satedi, France/international, 2007 (2008?)

As far as I know, autistics.org, APANA, PASS-partout, Aspies for Freedom and the Autscape organisers are not officially registered associations or societies. Which doesn't mean they are less significant in any way. I assume the amount of work involved - which would vary from one country to another - and the number of people willing to organise official meetings and such, determines whether people want to get registered.

Reasons for getting started

I tend to wander around on the net, stopping on different forums and lists sometimes to meet new people. I like to keep an eye on autistic culture developing in different countries, and I've ended up writing course materials about it, among other things. I feel I should share some of the knowledge I've gained with the internet communities. Since I tend to be very busy, with my work and children, I will just start by putting bits and pieces in this blog, for anyone to find... maybe I will get comments that will guide me further.

This is also an attempt to look outward, from our somewhat isolated Finnish autistic community. I am heavily involved in developing new things here, and sometimes I develop a minor existential crisis and feel a need to look for influences and opinions elsewhere. For those who don't know, Finland is a country in Europe, between Sweden and Russia, with its own language and a population of about 5 million.